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Wednesday, January 30, 2013

Self-Stimulating Behaviors or
"Stimming" Definition: Self-stimulating behaviors or
"stimming" are stereotyped or repetitive movements or posturing of
the body. They include mannerisms of the hands (such as handflapping, finger
twisting or flicking, rubbing, or wringing hands), body (such as rocking,
swaying, or pacing), and odd posturing (such as posturing of the fingers,
hands, or arms). Sometimes they involve objects such as tossing string in the
air or twisting pieces of lint. These mannerisms may appear not to have any
meaning or function, although they may have significance for the child, such as
providing sensory stimulation (also referred to as self-stimulating behavior),
communicating to avoid demands, or request a desired object or attention, or
soothing when wary or anxious. These repetitive mannerisms are common in
children with ASD [Autism Spectrum Disorders]. (source: http://www.autismspeaks.org/what-autism/video-glossary/glossary-terms)

Every time we let Nami out of his bedroom in the morning he
runs straight to his place on the couch (where he doesn’t let anyone sit) and
starts rocking back and forth and waving his hands quickly in front of his
eyes. He’s not worried about eating, saying hi, getting his usually-sopping-wet
diaper changed, or anything else for that matter. Sometimes when Nami wakes up
at 4 in the morning, we just let him play in his room until 6 or so, when we
feel we can get up for the day. Nami will lay on his floor and kick the door
until we let him out…yes, sometimes for two hours straight. We have learned to
partially sleep through the banging so that we can somewhat function the next day. He darts right past us the second the door opens. It seems
like Nami’s desire to stim is so strong that he can’t calm down until he gets
to do it. Nami has many self-stimulating behaviors:

Rocking

Waving hands

Spinning anything and everything

Flinging door-stoppers

Aggressively shaking objects back and
forth in front of his face

Putting things in his mouth

Staring at lights

Watching fans spin

Rubbing his fingers together

Rubbing his lips

Making all sorts of vocal sounds

Many times Nami's hands are blurred in pictures

Sometimes Nami’s stimming behaviors are worse than others.
All Nami wanted to do last week was to stim and I was too tired to stop him. He
didn’t talk much, he didn’t eat much, he didn’t move off his spot on the couch
much. He would just rock and rock and rock while saying, “uhhUHH uhhhUHHH uhhhUhhh”.
He was having constant seizures. His days were spent seizing, then rocking,
then seizing then rocking, then seizing, then rocking……

Why does stimming, or
self-stimulation happen? Researchers
have suggested various reasons for why a person may engage in stereotypic
behaviors. One set of theories suggests that these behaviors provide the person
with sensory stimulation (i.e., the person's sense is hyposensitive). Due to
some dysfunctional system in the brain or periphery, the body craves
stimulation; and thus, the person engages in these behaviors to excite or
arouse the nervous system. One specific theory states that these behaviors
release beta-endorphins in the body (endogeneous opiate-like substances) and
provides the person with some form of internal pleasure.

Another set of theories states that these behaviors are exhibited to
calm a person (i.e., the person's sense is hypersensitive). That is, the
environment is too stimulating and the person is in a state of sensory-overload.
As a result, the individual engages in these behaviors to block-out the
over-stimulating environment; and his/her attention becomes focused inwardly.

These explanations clarify WHY Nami spends so
much time stimming. It is a tiring thing to try to redirect Nami when he does
this. It would take a constant effort throughout the day to keep Nami from stimming. Many times I just let Nami stim because it is the only break I get.
He will not watch television or play with toys (unless he can stim off of
them). I never thought I’d see the day where I WANTED a child of mine to watch
television! I allow Nami to stim under certain circumstances such as when I
really need to get something done, when he’s in his room going to sleep, when
we’re at the hospital or doctor’s appointments or when we are in public. If I
don’t allow Nami to stim in public, he will often throw big tantrums and
sometimes get violent. I always get nervous taking Nami in public places
because I never know what’s going to happen…with him or to him.

In April of last year, Salesi and I took our two boys to
Boston in order for Nami to participate in a study that looks at Autism in
children with Tuberous Sclerosis. I was terrified to say the least. An entire
plane ride with Nami seemed impossible! I spent days preparing treats,
activities and toys that Nami could stim off of. We had a layover on our way
there, so both times we got on the plane I tried to make sure we could be one
of the first on the plane. Getting Nami settled before
there is a big crowd of people pushing everywhere is better for EVERYONE. The
first time we boarded, the airline staff was so helpful. They allowed us on early which gave us time to get Nami settled before it was too crowded.

The second time we boarded was a nightmare. I have flown quite a bit in my life and I have always heard airlines announce something like the
following after the first-class boarded: “Those who have small children or need extra
time may now board”. This statement never came for the second flight. I went to
ask the guy at the gate, who glared at me, then my children, if we could board. He told me we couldn't board yet. I explained that we had always been allowed to board planes first with our kids. He replied that this
was NEVER how things worked on that airline. I was confused as we had just
gotten off a plane from the same airline and they let us board first. Instead of protesting more we waited for our zone to be
called so we could board. As we worked our way to the gate the same guy refused our entry again! He rudely stated, “People with kids can’t
get on until after everyone else has boarded.” I was so shocked I couldn’t respond. I just sat
their anxiously while everyone boarded the plane.

We were nearly the last people entering the plane, so all those before us had already stored their carry-ons. We had
front-row seating because of Nami’s autism and medical concerns, but there was
absolutely no place to put any of our carry-ons. As we entered, the passengers who had plenty of time to board and get settled seemed to all be glaring at us…maybe because we brought kids on? All the overhead
bins near us were full and there was no under-the-seat storage for the front row. There was a family of four sitting behind us, across both sides of the aisle. I saw them board first (I think because they were business class), so I knew they had first dibs on storage options for their carry-ons. All the storage places at their feet were empty, so I asked the mother behind me if I could use the empty place
under my seat to place one bag. She said, “no”.I had Salesi take all our
carry-ons farther back except the one that had all of Nami’s stuff in it. I
searched the overhead bins again and saw a jacket laying there. I moved it over
a couple inches so that our backpack would fit. The lady across the aisle stood
up right after, took the backpack down, held it in the air in front of me and
said, “This bag is smashing my husband’s jacket”. Tears started swelling in my
eyes. I thought, “DON’T THESE PEOPLE KNOW THAT I AM TRYING TO MAKE THIS FLIGHT
BEARABLE FOR THEM?!?!?!?!” (Oh man, I’m getting anxiety just thinking about
this again!) I was stunned and just stood there holding my bag in the aisle, not knowing what
to do. All the while, the flight attendants were trying to hurry us into our
seats because we were the only ones not settled. Another lady a couple rows
back stood up and pointed to a bag in the bin above me and asked the passengers, “Is this
anyone’s bag?” No one answered, so she turned to me and said, “Here, we can put
this bag back here.” Then she took my backpack out of my hands and placed it
above my head. I don’t know what would have happened if this angel hadn’t
intervened!

I had been so flustered this whole time and Nami could feel
it. The moment I sat him down he started rocking back and forth, back and
forth. I was grateful he wasn’t screaming like he initially did on our first
flight. Once I was able to sit, I buried my head and bawled. I cried as we took
off and for a few minutes after, all the while Nami was rocking and Salesi was holding
Kope. About a ½ hour into our flight Nami was still rocking. He was humming all
the tones that he could hear the plane engines making. He was almost asleep and I was
grateful that I would finally get to relax. Then I got a tap on my shoulder. I
turned and the lady behind me said in a fake nice voice, “I would appreciate it
if you’d make your son stop rocking.” I felt like screaming, “YOU IDIOT! HE
WOULD BE A TANTRUMING MESS IF HE WASN’T ROCKING!!!” Instead I politely replied,
“I’m sorry but he has hundreds of tumors on his brain and I can’t control his
behavior”. This wasn’t the most brilliant statement I’d ever made. She scoffed and sat
back in her seat as my tears started up all over again.

After the experience on the plane I began to fear that
everyone was annoyed by Nami’s stimming behavior. My younger brother,
Geoff, recently spoke to a group of people about goal-setting. The following is
an excerpt of what he said, relating Nami’s stimming behaviors to the topic:Over the past year or so a series of
experiences have led me to think about what I wanted out of life more seriously
than ever. One of these experiences I would like to share with you. It is about
one of the most amazing people I know, my three-year-old nephew…Nami. I don’t
often use the word cute but this boy is cute as well as handsome. For those who
have had the privilege of meeting him, I don’t believe there has been a heart
he didn’t melt and a face he didn’t cause to smile. He is the happiest person I
have ever met. He is one of the greatest
blessings to my family and me.Nami’s parents have also been through a lot
in order to raise this awesome person. Nami was born with TSC, which stands for
tuberous sclerosis complex. TSC has caused tumors to grow on all of his organs.
Nami battles autism and infantile spasms. He has countless seizures a day that have
threatened his life and severely slowed his mental development. He has stellar
parents, who have been on top of seizing every opportunity to help their son.
About a year ago he started having [intense therapy] to help him to progress.

One of the things Nami loves to do is to
spin things. He will tip anything with a wheel, on its side so the wheel hangs
freely in the air and spin the wheel with his hand repeatedly. Though this may
seem like a harmless activity, it actually hinders his mental development. The
hours he spends spinning something are hours robbing his brain of beneficial
activities that would help him develop. Without any intervention, Nami would
probably spin things for hours each day. My family was instructed that one of
the ways they could help is to redirect his attention to doing something
beneficial such as: help him do a puzzle, encourage other kids to interact with
him, help him say new words, or read a book with him. Anytime Nami began
spinning something that was the family’s queue to intervene.

Without a doubt in my mind his parents are responsible for Nami’s
progress. With the help of family and therapists Nami’s parents have helped
Nami make tremendous progress. He knows a handful of words and is making
progress. Though his life will be different from the way you or I are able to
live, he has had a remarkable impact on my life. His obsession with spinning
wheels has caused me to regularly think what things do I engage in that prevent
me from growing spiritually, mentally, physically, and socially. This year I
have set goals to help me regulate the time I spend on these unfulfilling
activities. I know that I will be greatly rewarded in my life if I learn how to
redirect unfulfilling time towards something productive. And I will be forever
grateful to Nami for this powerful lesson he has taught me.

I will never be able to adequately express my gratitude for
my family. I appreciate Geoff’s perspective about Nami’s stimming. I love to watch him as he patiently and lovingly interacts with Nami. I’m thankful
that he, along with the rest of my family see Nami as the blessing that he is
and that they constantly support us through our hardships.

Since the plane incident, I leave the house prepared with
the following cards to hand out:

Hi, my name is
Nami. I have a disease called Tuberous Sclerosis Complex (TSC) which causes
tumors to grow on my vital body organs. I have hundreds of brain tumors, heart
tumors, kidney tumors and cysts and an eye tumor. One of the many difficulties
TSC causes me is autism which greatly impacts my behavior. My parents work very
hard to help me behave but it is difficult for me. I also have epilepsy. Feel
free to read more about me at afteritsoaksin.blogspot.com

Thursday, January 24, 2013

My husband recently returned from a 2 ½ week visit to his family in Tonga where he enjoyed the
beautiful sun, sandy beaches and delicious food. He came home looking very healthy and dark
from the sun and it reminded me of when we first met. Because of this, I've decided to reflect on our story a bit more. Besides, my postAn Unlikely Union quickly became one of my most viewed posts. I guess because my
husband is way cool or something?

I attended a small university in Hawaii for most of my
college education during the late 1990s. When I was there, the campus comprised
approximately 2200 students with over 70 cultures represented. Imagine that…a
student body so few in number yet so diverse! There were bound to be countless
misunderstandings and breaking of cultural norms. I, being the natural
anthropologically-minded person that I am, had a hay day observing interactions
between students. I was in culture heaven. I loved listening to all the
different languages spoken and learning to identify each one. I worked at the
Polynesian Cultural Center (PCC, probably my favorite job ever) and interacted with
tourists from all around the world. At one point I was a tour guide, so I
learned all I could about each country represented in the center and thoroughly
enjoyed sharing my new-found knowledge with the tour groups. I majored in
Inter-Cultural Studies with an emphasis in Anthropology. I was part of the
second class at the school earning this degree. I think there were only six of
us, the first class only had one student. I loved all my professors in the
major and was completely taken in by the subjects they taught. I was a bookworm
(I was not a fast reader but I LOVED learning). In some of my
classes we were assigned almost 1 book/week to read in addition to the
textbook. My co-students thought I was crazy because I read every word of every
book. I took notebooks and notebooks full of notes. I studied about 8 hours a
day. I didn’t date much and my only reprieve was to go visit my sister and her
family who lived in Honolulu (her husband was the quarterback of the university
football team).

Soon after I started college in Hawaii, I became good
friends with a girl from Samoa. We met while working, making and selling
pineapple delights at PCC, and quickly realized our dorm rooms were nearly
right next to each other. My friendship with her introduced me to the Samoan
culture and I quickly knew who most of the Samoans on campus were. We were opposite in a lot of ways. I was antisocial and shy. She was very outgoing and seemed
to know everyone on campus and they knew her, including all the Tongan guys. So I thought I knew who all them were even though most of them didn't know me. Apparently, I did not.

During my final semester in Hawaii, I finally decided to move
off campus which was a difficult decision given that most of my friends were international
students and had to live on campus. I moved into a house that I shared with 8
other girls. I knew who a few of them were, but I didn’t know any of them well.
Within the first week of being back at school after summer break, some Tongan
guys had come to visit some of my housemates. Apparently one of
the guys was “taken” by me as he watched me out on the lanai, talking to my family
on the phone. Can’t you just picture this…so romantic! (Joke…the situation just
sounds so corny so I had to throw that in.) After seeing me outside, he tried
to get me to come and sit by him to watch a movie with him and a bunch of other
people in our living room. I finally relented and sat for about 2 minutes
before being bored with the Disney show they were watching and left. He turned
to one of my housemates and said, “What did you do? Why did you make her leave?”

Later this guy tried to get another one of my housemates to
ask me out for him. I was NOT going to be tricked by the attention I was receiving from this Tongan. I knew
better. I thought, “He’s just kidding around and has no intention of really
taking me out.” I had lived on this campus for two years by then and and because of my major in anthropology I was always observing cultural norms. I
knew that dating norms differed from culture to culture. I had no prior
experience dating a Tongan, but many Tongans who already had girlfriends had
been really friendly and flirtatious with girls from the mainland (what mainland U.S. is called there). Many Tongan guys had even approached me thinking I was a “new girl” and didn’t know them. The
fact was that I was just socially awkward (still am) and a huge nerd (not
smart, just weird) and they hadn’t noticed that I’d already lived on campus for
a year and a half! Like I said, my Samoan friend was friends with all of them, so I
had seen them talking often and knew who most of them were. When I observed many of
them not telling girls their real names or ages and some pretending not to have
girlfriends when they did, I felt I needed to be cautious. Now, not all
Tongan guys did this, but I’d observed enough of a pattern that I
decided to do some research.

When my housemate came to me and told me that this guy had
asked her to ask me out for him, I told her, “You go tell him that if he comes
up with a real plan and asks me out himself, MAYBE I will say yes” to which she
obliged. It took him a couple days to build up the courage to come and ask me
out. When he arrived he was shaking. He tried to act interested in the Samoan
homework I was doing, which I know he had no interest in at all. He asked what
I was doing that weekend and I told him, “I’m going to watch my brother-in-law’s
football game in town.” He said, “Oh, so you’re not going to be around?” I
said, “I will be on Friday, but not on Saturday”. He asked if I would go to a
movie with him on Friday night. He assured me that he had a car lined up so we
could drive to town and we would double with one of my roommates and his friend.
I said, “Sure,” still not fully believing that it would happen.

Over the next few days, I tried to figure out more about
this Salesi guy. I went to my Samoan friend who told me, “There are only two
Salesis. One is a cheerleader and one used to date _____ (our former
co-worker).” To be honest, neither of those sounded like good options to me. I
didn’t want to date the ex-boyfriend of someone I had known for two years, and
I didn’t want to date a cheerleader because I felt I was too shy. After further
investigation, I concluded that it was the Salesi that was
_____’s ex-boyfriend. I decided that I could go on the one date since I'd already said yes and then call it good there.

Friday afternoon arrived and I hadn’t heard from Salesi
since he asked me out on Tuesday. I made preparations to go hang out with one
of my good friends who lived on Laie Point. I was just getting ready to leave
with her when Salesi popped in the house. He looked a little concerned, seeing
that I was leaving the house. He said, “Are we still going tonight?” I said, “I
don’t know, are we?” He said, “Yes, I just gotta go get the car and I’ll be
back at 6:30.” Going to the Point was called off and I got ready for the date
instead. I still didn’t believe 100% that it was going to happen. 6:30 came
around and no Salesi. Shortly after, I received a message from him that his
friend needed to keep his car, so he was trying to find
another car. The hours started ticking by and still no Salesi. He kept having
his friend who was doubling with us call his date, my housemate,
and explain that they were still coming.

At 9:00 an embarrassed Salesi arrived. He
explained that he couldn’t get a car that we could drive to town. You see,
Hawaii is filled with clunker cars that barely run. Many of them do not have
current registration and they just get passed around from person to person to
get places that are close by. A clunker was the only car Salesi could obtain,
so our date would have to remain within a few miles of campus. He asked if we
could try the local theater. I thought, “Let’s just get this date over with” and I said, “okay”. We didn’t like the option of the one movie
playing there, so we decided to walk on the beach instead. We drove to Sunset
Beach and ended up sitting and talking for a couple hours. There was never a
dull moment and we conversed with ease. This shocked me. Although it was not
love at first sight (for me anyway =), it was definitely a strong liking at
first conversing! After all the talking, Salesi asked if he could kiss me. I
set aside my annoyance that he asked and said, “Yes”. To kiss on our first date
meant that I was REALLY liking this guy. Shortly after, we went to a
dance on campus which lasted until 1:30 am. We danced a lot but also ended up
spending more time outside sitting on the curb and talking. I couldn’t
believe that we weren’t running out of things to say. I think we may have gone
to the ever-so-famous Chevron near campus to get a snack after the
dance before he brought me home.

That was it...I was a goner. Our relationship had begun. I went to the football game but came home on Sunday.
Salesi and I spent nearly all day, every day together for the next few weeks. I’m sure Salesi’s version of our meeting is much different than mine, but I
assure you mine is the correct one. After knowing Salesi for 13 ½ years,
it is really shocking to me that he actually followed through with this date. I
am surprised that he just didn’t show up after the car thing didn’t work out
and then avoid me forever after. I guess because it was meant to be that he
pushed through a type of situation that he consistently tends to avoid. I’m
glad he pushed through any awkwardness he felt and made it to our first date!

Thursday, January 17, 2013

This past week there has been a weight on my chest making it
difficult…almost impossible to breathe. I felt exactly where I was a few months
ago: ravenously hungry, sore all over, paralyzed, OUT OF CONTROL. I started
asking myself, “How did I get back here? I’ve taken steps to get help. I am
openly accepting help from others for the first time in my life. I feel like I’ve
been moving in the right direction to manage my life, and yet I find myself
back to square one.” Yet today, somehow, my head feels clearer again, enabling
me to finish this post that I started months ago.

When people hear about what we’re dealing with, they often
ask me, “How do you do it?” To be honest, I don’t want to do it and I don’t
know how I do it. Most days I feel like I’m not doing it. A couple weeks ago
Nami spit out some of his anti-epileptic meds at me. I had no idea how much he
spit out and because he’s at the max dose I didn’t dare try to guess how much
more to give him. It ended up being a very bad seizure day with a seizure every
few minutes. Many of his seizures lasted a couple minutes and were on the scary
side. As the day went on, he became very cold. His lips were purple and his
hands and feet like icicles. There was nothing I could do to warm him up. When
I asked our pediatrician (my dad) about it, he said that seizures could cause
Nami to be this cold. I couldn’t believe that all this happened from just
missing part of one dose of medicine. Even though on Nami’s best days he still
has about 20-40 seizures, this experience made me realize how much worse off he
would be without all the medication. It also made me desire brain surgery for
him even more.

The journey down the road to possible brain surgery started
in September when many of Nami’s doctors gathered for a conference with me to
discuss Nami’s care. It was overwhelming to be there, talking with each doctor
and trying to figure out the care Nami needed for each affected organ. While discussing
his brain, we talked about the option for brain surgery in more depth than ever
before. As we talked I felt for the first time that this may be the route we could go.

Starting to seriously consider brain surgery for our son introduced
me to panic attacks. It was a Sunday night in October, before Nami went in for
his first hospital stay for testing (a 72 hour video EEG), that Salesi and I
decided that we both felt like if the tests showed surgery was an option for Nami,
we would do it. We both felt like that was a good decision. As I tried to sleep
that night, panic set in. There was so much pressure on my chest. I couldn’t
breathe. I told myself, “You just have to work one day this week. You can get
through this.” I talked myself into going to work after a sleepless night. The
pressure and difficulty breathing continued at school (I teach). I tried to
hide my discomfort from my students while I barely made it through the lessons.
It took every ounce of my will to stay sitting upright on my stool. I didn’t dare
move an inch. Throughout the day I calmly explained to each class that we would
be doing brain testing for my son that week and that I’d be out for a few days.
I asked if they would be patient with me while going through this process. I have
the BEST students! They have been patient, mature, thoughtful, hard-working and
SO MUCH FUN!

I made it through the first three of four classes and
despite feeling like I was going to explode, the lessons seemed to go well. Lunch
is after 3rd period and at that time I went to my friend in the front office and
collapsed. I couldn’t breathe. I couldn’t walk. I just sat hunched over on her floor
and cried and cried and cried. She told me she was taking me right home. My
irrational self said, “No, I have to teach one more period.” She said, “No, you
are going home right now.” The front office staff scrambled and found a way to
help me out with my 4th period class. Miraculously, my sister called
me at that moment and I just sobbed incomprehensibly to her. She said she was
on her way to get me. She picked me up at the school and took me home. I spent the next few hours lying
in the fetal position on my bed. I was in so much pain. My head was pulsing, I
couldn’t breathe and I couldn’t move. I took a sleeping pill, a sumatriptan for
my headache, and anything else I thought might help. It took me 4 days and a
lot of medicine before I felt I had recovered. Three of those days were spent
in the hospital with Nami. I watched as the doctors made him seize, just
enough, so they could detect if there was a “hot spot” where most the seizure
activity was coming from. I’m sure going through that impacted the length of my
recovery.

The panic attacks have continued, but none as severe as the
first one. After the first one I quickly got in to see one of my new doctors and he helped me
manage my new condition. Over the past decade, I have had to shed my belief
that taking medicine makes you weak. After this experience I was beyond worrying
about any negative stigmas attached to certain medications and I went full
force into trying to get through this. For now, medicine is helping me
function. It’s weird, because I remember times when I was growing up when I
thought, “How can someone lose complete control of their body?” Although I grew
more empathetic in my late teen and adult years, I had never experienced
anything that would make me really know what it was like. Well, now I know. I
am learning to breathe through the next day, sometimes hour, or even minute.
Sometimes that’s all I can do to get through.

.

About Me

I’ve finally decided to put it out there…cathartic for me and possibly helpful to someone else. I have often felt the urge to share our stories but feared being vulnerable. The experiences I share in my blog have had a profound effect on my life and made me who I am today. Even though I never thought I would write a blog (my writing skills are not that great, I use too many of these “!” and these “…”), I feel compelled to try, even if it is only useful to me and possibly my family.